Living with Vulvodynia

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Oh my goodness I am so sorry for the delay in writing my Operation recovery entry as I know a few of you have been really eager to know what to expect! I had a bit of a blip with my health, a holiday in France and I applied for and got a new dream job so it’s not all bad news! I am also not going to lie, the operation didn’t completely fix my problems and so I am still bouncing backwards and forwards to various different hospitals and consultants. In the end I guess I decided, rather selfishly, that I would leave the blog alone for a bit so I didn’t dwell on the Vulvodynia and let it ruin my life more than it does. Amazingly though I have had so many people contacting me asking how the operation was and how I am now that I realised that this blog may actually be useful to people and is clearly providing information to someone out there and so I’ve decided to get back at it.

I remember getting gingerly into the car for the short ride home worried that at some point the pain was really going to catch up with me, especially when the meds wore off. I also recall that form the moment I came round from the anesthetic I had more pain on the left hand side. This is important later.

I honestly think the recovery would’ve been so much worse without my SO who was just fab. He had prepared the settee for my arrival by putting towels down and readying pillows, quilts, blanket and my nightie. He had also got pain meds ready on the coffee table and had bought two bags of frozen peas that were ready to go.

He made me slouch on the settee and refused to let me move! He fetched drinks, food, meds and whatever else I wanted. I managed to make a few phonecalls to family and skyped people before the pain started to become more obvious. In fact throughout the recovery the hardest part, other than keeping still, was getting off the settee to go to the toilet as this did trigger quite a bit of pain. Again, my SO was wonderful and helped me up and supported me the whole way. Because I am a greedy sod I also found that my appetite was as strong as normal and that I had no obvious lasting effects from the anesthetic and that the pain was never so bad as to put me off my food.

I can’t remember how long it was before I removed the padding the day of the operation, but it was definitely before I went to bed the first night. I put on a large, old pair of knickers and a normal period pad to manage the bleeding. My SO helped me into bed and I was nervous that I would have a bad night. I actually found that lying down took the pressure off the area and compared with when I had my wisdom teeth removed my night and the pain were fine. I woke up once for more painkillers but otherwise it was uneventful.

Throughout the first week my SO did everything for me so I didn’t have to move too much. We watched lots of films (including a star wars-athon) and I slept on and off when I felt like it.

My mum came to visit after a couple of days and I noticed that I felt incredibly sick and dizzy when I was trying to talk to her. She suggested that it might be the co-codomal so I decided to stop taking it. The dizziness stopped fairly quickly and I found I could manage with just paracetamol, ibruprofen and frozen peas.

The hospital recommended I take shallow baths every couple of days and I had to make sure I kept soap away from the area for a few weeks. My SO helped me with the baths and washed my hair when it became so greasy I couldn’t stand it. The bleeding was generally very light and lasted a little over 2 weeks but was mainly like period spotting. I was terrified to look at the area for quite a while and I will honestly say that when I did it knocked me a little sick. It was purple and bruised with these horrid black stitches. A real Frankenvagina! Maybe I am remembering it worse than it was but I definitely felt like I would never look normal again! I did though so the worry was unwarranted.

From my own personal experience there are there were three main issues I would like to mention for recovering from the Vestibulectomy for anyone who may have the operation:

1) The first bowel movement (sorry!) Even with drinking juice, eating prunes and taking a mild laxative I was still fairly constipated from the painkillers. This meant that I was terrified to go to the toilet and often ended up painfully straining, worried I would burst a stitch. One such occasion actually lead to….

2) Blood/clot release. As the swelling had started to subside, I ended up having a scary large bleed, worse than a heavy period. Again my SO was fab and he calmed me down and ran me a bath. Unfortunately when I got in the bath it turned pink with blood quite quickly and I could see I was still bleeding quite heavily. By this time I was really panicking and was imagining emergency operations and hospital visits. Luckily the bleeding did stop after around 10minutes or so however this was easily the scariest part of the whole recovery.

3) That familiar burning sensation. I found that whilst healing, the burning sensation I had already lived with for over 12 months still appeared to be there. In particular the left hand side, which I mentioned previously, was extremely sensitive and I would often get shooting pains there when I moved awkwardly or sat down wrong. This continued throughout the entire healing process and unfortunately is still there today but that’s for another entry.

I went back to the hospital after 3 weeks and they cut out some of the remaining stitches. By this point I was hardly in any discomfort anymore and was practically back to normal. I even went out with a friend for her birthday and to get me out of the house. After just over 4 weeks I went back to work, with some stitches still in place. A couple of these stitches I ended up getting removed after 6 weeks as they were poking in a bit.

I will go into more detail about what has happened since the operation in my next blog but just incase anyone is wondering I am now finally able to have sex a bit easier. Halleluja! Not going to lie, we are a bit limited due to the area still being a bit sensitive and through me now having a mild, understandable phobia but at least we now have the choice. I am still having issues on the inside, possibly due to inflammation in my muscles but I have managed to wear tampons successfully on a few different occasions. This is again something I never managed before.

Unfortunately the constant burning sensation is still there, as are the shooting pains from the left hand area. Apparently I may have allodynia, general nerve pain, which is supposedly separate from my operation as well as the muscles on the left being swollen and inflamed. This being unrelated to my operation is something I am not convinced about. Subsequently I am still having to live in skirts and find sitting a constant chore. I am not as bad as I was but life is still a bit of a drag. I originally was taking amitryptaline for the pain but found this made me drowsy. I am now taking Lyrica instead which isn’t really solving the problem but at least the side effects are minimal. Lidocaine also helps a bit so I can’t complain too much.

Even though I am not totally fixed and have other ongoing issues I would like to point out that I don’t regret having the operation. The recovery for me was fairly straight forward and I am now able to at least explore a normal sex life as well as not having to worry if I am on a period when I want to go swimming. I still believe that cutting off the area that hurts really isn’t a good cure but it is one of the few options currently available to suffers of VVS and if it gives people even a small % of relief then I guess it’s better than nothing.

I will also add that if you are considering having this operation, please make sure you go into it fully prepared for it to not work 100%. I really wasn’t prepared and that caused me to be quite depressed for a while. Also make sure your consultant has tested you to ensure the Operation will actually help and that they have experience of performing it. There is so much more I could write about my opinions on the various treatments I am trying however I think this post is long enough. If you have any questions about the surgery then get in touch J

Apologies for the delay on this blog post. I have been pretty busy at work and I wanted to ensure I got this post as accurate and informative as possible as I have had loads of enquiries regarding my operation. I will apologise now for what will be a particularly long post.

So, to pick up where I left off, I went off to a private hospital to see an expert in the field of VVS and V.

Private clinics = wow! I went to a BMI hospital. There was no waiting, plenty of parking, nice comfy seats, helpful staff and tea and coffee machines! It was absolutely lovely. If I only I had the money to go private all the time I think I would be fair healthier and definitely less stressed. However, my private treatment cost between £160-£190 per visit. Visits that invariably lasted approximately 30minutes. Ouch my purse! :-S

For my first visit I dragged my SO with me (much to his delight of course!) The whole experience was so relaxing compared with my NHS experiences. I started to describe my symptoms and after only a few minutes he stopped me and said “I think I know exactly what you have so there is no need to continue.” He then went on to describe my symptoms perfectly. I was amazed. Less than 5 minutes. No arguing or doubtful looks. This man seemed to have it sorted already. He asked to examine me anyway for quality (?) sake and got me to pop up on yet another examination table. How many people have now seen my vagina? I have lost count. Much to my poor SO’s bewilderment he didn’t ask him to leave and performed the examination with him in the room, something I am now very glad of.

My examination went something like this:

Firstly, he didn’t use a speculum as he knew it would hurt me. Praise be! I could’ve kissed the man! He took an ordinary cotton bud and said to my SO, “If I poke you in the arm with this, does it hurt?” Clearly not. He continued, “Is there anywhere on your skin that I could poke you with this and it would hurt?” Again my SO answered “No.” “Of course not,” said the consultant, “as you don’t have the nerves there to trigger that sort of pain response to such a light touch.” He then took the cotton bud and touched the 6 o’clock spot at the entrance to my vagina very lightly. As you can imagine, I hit the rough and tried not to leap off the table. “And that,” he announced proudly, “Is why your pain is a real physiological problem and not a psychological one.” 10/10. He get’s it. I mean actually get’s it. My SO looked dumbfounded (probably because another man was touching his finances vagina!) and enlightened. He knew it wasn’t in my head but I think that’s the first time he really understood just how simple, yet ridiculous, the problem was.

Once I was down off the couch he explained that I definitely had provoked VVS, which he had just proved, but also understood that these new symptoms were possibly not consistent with that diagnosis alone. He then went on to explain that I could have a more mixed picture with some generalized Vulvodynia or the VVS could be causing a pain response in a more generalised way. His suggestion was to go home and try lidocaine, both when I was in pain and before any vaginal penetration and see how I got on. To cut a long story short, I found that not only did this make sex less painful but it also made the daily discomfort ease off. It was such a simple answer to ease my pain temporarily that I was fuming that I had suffered for years with painful sex and 6 months with general pain and yet no one had tried Lidocaine. Yes it’s not a cure but it would’ve helped me get through the painful days whilst they did all the damn examinations with speculums and actually was a simple way of proving that my pain wasn’t completely in my head.

It was after using the Lidocaine for a while and having success with it that he decided that the Operation was likely to be my best option and that we could hope it would fix all my problems. Now I know what you are going to say. “You were offered the operation before. Why have you gone and spent a fortune on a private consultant just to get the same outcome.” Well, you are right. However you have to remember the place I was in mentally. The NHS had, so far, proved less than helpful and the original person I saw didn’t seem to even take into consideration my other symptoms. Ok so I got the same outcome but at least privately they actually tried something that would prove whether or not the operation was viable. It was just as possible that the Lidocaine wouldn’t have worked and, had I have stayed with the NHS, I would’ve been operated on pointlessly. Not something I really wanted to happen.

The operation was booked on the NHS (to have had it privately would’ve cost thousands. I kid you not) and I started my countdown….

The operation I had was called a Partial Vestibulectomy with modified fentons. Essentially “the innervated fibers are excised. A vaginal extension may be performed, in which vaginal tissue is pulled forward and sewn in place of the removed skin.” – Wikipedia. So if you imagine the entrance to the vagina as a clock face, I had my vestibule tissue removed from the 3 o’clock position to the 9 o’clock position and my vagina entrance slightly shortened and widened at the bottom. Sounds pretty gruesome right? Well it wasn’t great but bare in mind that the NHS consider this a “minor day case.”

I will now explain what my experiences were of the operation.

I had one pre-op appointment a few weeks before the operation where they essentially weighed me, measured my height and took my medical notes. It lasted less than 10minutes and there were no needles or tests or anything of that kind. I received a leaflet but there wasn’t really much useful information on it. Remember this is a minor day case operation.

Before the big day I decided to research for myself what I would need post op and what to expect on the day, using other people’s blogs and facebook groups, as I had received so little guidance. Do a google search for “Vestibulectomy” now and you will see that most of the top results are blogs. I found the following advice:

Rest and lots of it. Make sure you get your bed/settee set up in advance.

Ice, ice, baby. Again, lots of it

Expect to wear pads as you will bleed for a while.

Make sure you have comfy, loose clothes to wear. I.e., a nightie/dressing gown

If you can, have someone to look after you for the first week so you don’t get up and about too much.

Lot’s of painkillers

Dulcoease or a laxative as painkillers can make you constipated and you can easily burst a stitch straining. (I would never have thought of this!)

All this advice proved invaluable as I will explain in my next blog post which will cover my Post-Op recovery.

So the big day came…..I can’t remember if I had to starve myself before my Operation. I imagine so but as I was due to arrive at the hospital at 7am and I was nervous as hell I didn’t eat anyway. I had packed a dressing gown, slippers, book and easy to wear clothes for afterwards. Stupidly I didn’t take my phone as I didn’t trust the hospital or the people in it enough to not steal it whilst I was under. All the advice on what to wear came from family members who’s had operations before. Otherwise I wouldn’t have taken anything! I had had literally no guidance form the NHS.

My SO took me to the hospital and had to leave me at the ward door due to possible contamination and MRSA. I nearly cried when he left. I felt so alone and scared and was wondering whether I’d ever see him again. Stupid I know. They stuck a tag on my wrist and escorted me in. I felt like I was being lead to my doom I was that worked up.

They showed me to a bed, made me take off my clothes and get into a backless gown and some rather fetching paper knickers! Thank goodness I had my slippers and dressing gown. They then left me to it. I sat there trying to read my book, surrounded by about 7 other stressed and nervous women each with their own curtained bed area.

Time ticked slowly by. I was visited by one nurse who confirmed all my details and had me take some painkillers with the smallest amount of water I’d ever seen. I eventually couldn’t manage it so they gave me dissolved painkillers instead. I was again left to my own devices. I hadn’t even brought a watch! I was then visited by the anesthetist who, again, confirmed all my details, medications etc and then left. I now had a face for the man who could possibly kill me! My private consultant also came round to check on us all but these visits seemed small, engulfed by the vast stretches of silence and boredom.

I ended up going to the toilet to see what time it was. Around 9:30! I was sooo bored and lonely and scared. “Why didn’t I bring my bloody phone?” The leaflet had originally said that patients family were to ring at 11 o’clock to organize pick up. A couple of women had been escorted past me with their beds so I knew I was getting close. I wanted to wet myself.

Eventually around 10:30 a lovely male nurse came to see me to announce that it was my turn! Fear nearly caused my heart to stop. He joked with me and put me at ease before escorting me out of the ward, pushing my bed. I was lead into a white, sterilised room where my male anesthetist, male consultant and another man were gowned up and waiting. The nurse pushing my bed also had gowned up. I climbed onto the bed and had 4 men all staring at my vagina and me! Awkward. Whilst the anesthetist got me ready, the other man generally chatted too me and tried to put me at my ease. I don’t know if this was his actual job but he was very good at it. I had my injection, which hurt a bit, and very slowly started to drift of, still being gawped at by all 4 men…..

Then I woke up! Anyone who’s ever had anesthetic will know that strange feeling where you think you can remember everything but actually you have no idea where you are. It’s like waking from a very deep sleep whilst massively hungover. The first thing I noticed was a dull pain in my vagina. Nothing too much but obviously there. I also noticed the eczema on my hands was acting up just to put it into perspective. Another lovely nurse was at hand to help me come round. When I was a bit more compos mentis she eased me into a seated position and asked me if I’d like some food. Yes! God yes! I was so hungry. My appetite doesn’t lessen even 5 minutes after my vagina being butchered it seems.

She disappeared and brought me some water and some toast. Toast has never tasted so good. I wolfed it down. Then, less than 15minutes after waking from my first operation, I was bored and restless. I caught a passing nurse and asked them what I was supposed to do now. Slightly taken aback she said that before I could leave I would have to go to the toilet. “Fine,” I thought, “Anything to keep me busy.” She attempted to help me to my feet slowly and I was like Bambi on ice. I could barely stand at first. Determined though, I stood, wobbled and firmly started off to the toilet.

It was only during my walk that I realised that this was probably not going to be very nice. The nurse fetched me a cup of water and explained that a) I was wearing some padding in my underwear so to be careful and b) that it would probably sting so to use the water to dilute it. Bugger. I went in the toilet and gingerly pulled my underwear down. I was sore and there was a bit of blood but nothing as bad as I expected. I sat down and attempted my first Post Vestibulectomy wee. It took me a while to sum up the courage but eventually I managed it and it barely hurt. Excellent! Pants up, toilet flushed and I announced, “I’m done. Can I leave?” The nurse laughed and said of course I could.

I gingerly got dressed (loose clothes were a blessing) and signed my discharged forms before ringing my SO. When he answered he sounded so nervous I could’ve cried for him. Turns out he had rang at 11, like he was supposed to, and was told that I had just been wheeled down. I was ringing him less than an hour later so naturally he assumed that it was going to be a nurse with bad news. He couldn’t believe I was ready to come home. I could. I’d had enough! I paced about, waiting for my fiancé and eventually got out of there!

I must say that everyone was very lovely and treated me very well but I definitely got the impression that most of the staff didn’t have any idea what I actually suffered from. I asked one nurse, who handed me an after care leaflet (which was useless) how long I should be waiting before I try to have sex, i.e. do I need to wait until I see my consultant at 3 months post op. Her answer? “I would leave it a couple of weeks!” A couple of weeks? My stitches don’t dissolve for 6 weeks. What on earth?! I eventually arrived back home and started making phonecalls to family to let them know I was ok.

Phew that felt like a long post! I had best save my Post-op recovery for another blog post. Hopefully it won’t be as long as this one. In the meantime if you have any questions then fire away 🙂

I can’t believe I’ve had over 200 views since yesterday. That really is incredible 😀 Thank you to everyone who has taken the time to read my musings. That’s another 200+ people who are now at least aware that Vulvodynia exists and that can only be a good thing. As I am having a fairly pain free day today I thought I would keep the momentum going by writing another post. I promise I won’t write them too often. I don’t want people getting bored 😛

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So, the day I woke with Vulvodynia. That sounds really dramatic. In truth, it was a fairly gradual process. This may get a little complication so I apologise if it doesn’t make much sense.

I actually suffered with Vulval Vestibulitis (VVS) long before my full Vulvodynia started though at the time I had no idea this is what I had.

Vulval Vestibulitis is Vulvodynia localized to the vulvar region.

I firstly realized I had problems when I was at university, approximately 6 years ago. Me and my Significant Other (SO) hadn’t been going out that long and we had just got our first bit of freedom. We were away from our parents and had our own flats for the first time in our lives so you can imagine what we did. That’s right, we had sex. Lots of it. Well what else are you supposed to do to pass the time as a student?….

At first we had no problems but after about a year I started to notice sex becoming increasingly more and more painful. I initially put this down to having too much of it and maybe becoming bored of my SO. However as time went by the pain got worse. I would describe it as a burning or cutting pain upon entry during intercourse. There was also a friction-like sensation.

I can’t quite remember what happened at that time, but I know I ended up seeing a doctor and then going to hospital. They informed me that I likely had an extra bit of skin at the entrance to my vagina that may or may not be causing pain. They said they could remove it but this would leave painful scar tissue and so their recommendations were steroid cream. Also clearly the stress from university probably meant a lot of it was in my head.

Now I have used steroid creams for the eczema on my hands for a long time and I have seen the mess it has made to my skin. There was no way I was going to put that stuff on my V-jay!

After trying our hardest to just “get over” my problem we took what I believe was a brave step for two university students who had only been together 2.5 years. We sought couples counseling from the charity Relate. Please check out their website as they are a good charity.

We saw a very nice lady who diagnosed me with and treated me for vaginismus. Yet another V condition.

Vaginismus – a condition where the muscles in the vagina tense suddenly, which makes any kind of vaginal penetration—including sexual intercourse—painful or impossible. This tension is not consciously controlled. Essentially I was subconsciously associating sex with pain and my vagina was shutting itself. Nice! I didn’t understand why that was happening but assumed it was partly to do with this odd piece of skin the hospital mentioned.

Using all the tips and tricks she taught us things did start to get better but they were never right and sex has never been particularly present or enjoyable. My SO describes my face during penetration as “a bulldog chewing a wasp.”

Now this is where the generalised Vulvodynia makes its appearance. Finally I bet you are thinking!

I was on a training course away form home for a few weeks. Within the first few days I started feeling this awful burning sensation down below. I was at this point wearing trousers and I figured maybe they were too tight. To attempt to alleviate the discomfort I kept disappearing off to the toilet or running up stairs to sit in the bathroom naked. I had my own room don’t worry! I also noticed I was discharging more than normal.

When the burning got worse rather than better I decided enough was enough and went to the local hospital. There I was informed that I had a minor infection and was given a few days antibiotics. These of course didn’t work and the burning continued to get worse. I saw my local GP who, upon examination, decided I had thrush. I was advised to get two lots of treatment and give it another week. She also took swabs just to be on the safe side. The pessaries and the cream seemed to do nothing and if anything made things worse. By now I was regularly on the phone to my SO crying whilst I lay in bed fanning my vagina with a book!

The swabs came back negative so I was told to try a different fungal cream and see how I got on. I went on holiday to Spain, where the condition did ease however that was probably because I was relaxed and not sitting down as often. Upon returning to England I was still suffering so back to the Doctors I went.

I can’t remember how many examinations and swabs I had done. Every single time they put that damn speculum in me I nearly hit the roof. One time the strength of my vaginal contractions forced it right off the bed! It’s funny now. It wasn’t at the time believe me. I had several medical experts tell me that “there was nothing there” and “maybe it will go away if you don’t think about it.” Not helpful. I was also prescribed Vagisil cream. Do not use this cream if you have similar problems to me. I suffered what felt like minor chemical burns. Evil stuff.

So after spending more than 6 months getting nowhere and having to make some of the lifestyle choices I mentioned on a previous blog post I was finally referred to the hospital. Yippee! I was finally going to get to see someone for a diagnosis.

I went along and after, you guessed it, another internal examination (this one included my bottom ) I was told I had Vulval Vestibulitis and my choices were surgery or a low oxalate diet.

I instantly had two concerns from this diagnosis.

1) I had, by now, research Vulval Vestibulitis and I realised that my sex problem was most likely down to that. The original hospital wasn’t actually that far off at all. However I knew that my other symptoms were different and I felt it was silly to dive straight into an operation without trying other routes first. This is my vagina we are talking about! I was sure I had general Vulvodynia as well as Vulval Vestibulitis.

2) Surgery vs diet change. Those are very polar treatments. How can they both treat the same thing effectively? Surely I should at least try the diet first?

I said as much to the consultant who at which point did something that upset me more than anything and this is quite silly of me. He stood up, shook my hand and said, “I really feel for women who suffer with this condition. I don’t know how you manage it. Good luck” or something of that nature. And that was it. I was discharged back to my doctor. I cried a lot that night I can tell you.

Well of course me being the difficult bugger that I am, and of course me having a biochemistry degree, I decided to research the low oxalate diet. At that time I could find no conclusive evidence that this diet really helped women with VVS. Kidney stones, yes. Interstitial Cystitis, probably but nothing conclusive for VVS. (Please note some women have said that it has helped them. For me personally I weighed up the stress of the diet vs the likelihood of success. This does not mean it would not work for you. I am not a doctor.)

The low oxalate diet involves avoiding certain fruits and vegetables, some nuts, some dairy products, some grains and all soy products. This list varies from Website to Website and I was supposed to do all this on my own with no dietician support. I decided it was too much and my doctor agreed. The stress it would cause plus some of the other health conditions eating such a limiting diet might cause worried me. Plus I had already started to weigh up the option of going private and had found the consultant I wanted to see. My doctor agreed with my decision, admitted there was little else he could do and he referred me.

I was about to get some posh private treatment and a maybe finally a cure! Or so I thought…..

To end on a positive note – My star of a SO actually proposed to me in Spain even with all these problems and obviously I said yes. 😀 I would therefore like to take this moment to thank him for being a truly wonderful person and to say I love him very much. I’m sorry our sex life is on the internet.

What is this life if, full of care,
We have no time to stand and stare.

Until less than two years ago I had great difficult keeping still. I wanted to be busy all the time. I would quite happily go straight from work to the pub or a café most nights of the week and even started going to the gym. In my free time, when I actually had any, I would play the piano and computer games. Whatever money was left over after paying bills went on alcohol, meals out and fashion; essentially anything I enjoyed doing. If I didn’t have something planned for an evening or, woe betides, a weekend then I would get depressed. I couldn’t stand to be bored. I was going to live it up while I could. Illness was something that only people who were older had and, in any case, what sort of person let’s illnesses stop them from doing things?

Then along came Vulvodynia. Or vulval vestibulitis. I’m not even sure which of the two conditions I actually have. It’s likely both as they are interchangeable and one and the same though with slightly different symptoms. I went to bed one day perfectly healthy, or so I thought, and woke the next day in discomfort. A discomfort I have subsequently felt every day since with no end in sight.

Ok this is where the gross stuff starts. If you feel uncomfortable when people talk about sex or at the mere mention of ladies bits then you may want to stop reading, make a cup of tea and do something else.

For those of you who are still reading I will now attempt to explain some of my symptoms and how Vulvodynia affects me. If you have found this blog by chance then you will likely already know all about how it affects you so I apologise for “teaching you to suck eggs” and all that.

Wikipedia describes the condition as “a chronic pain syndrome that affects the vulvar area and often occurs without an identifiable cause or visible pathology”

It is not known how many women suffer with Vulvodynia however the general figure is around 15%. I would say this was quite a high percentage for something that doctors barely recognize or understand.

Symptoms of Vulvodynia include:
-Burning, stinging, Itching and Rawness of the Vulval area.
-Pain in the vagina during insertion.

Symptoms are often felt whilst sitting, cycling, during sexual intercourse or tampon insertion. The symptoms may be all the time or just once in a while and may or may not be triggered by anything in particular.

Symptoms can occur at the entrance to the vagina, the labia or even the clitoris. There are also many interchangeable conditions that are all linked – Vulvar Vestibulitis, Interstitial Cystitis and Vaginismus to name a few. No one really understands what causes the condition, why it varies from person to person or the best way to treat it. What every woman who suffers with the condition understands is that it can be a nightmare to live with.

Causes may include:
• Nerve injury
• Abnormal response in vulvar cells to an infection or trauma
• Genetic predisposition to inflammation
• Allergies or irritation to chemicals or other substances
• Hormonal changes
• Frequent antibiotic use
• Sensitivity to yeast infections
• History of sexual abuse
• Over treatment for other Vulva conditions

Just the fact that the condition is so variable is in itself part of the frustration of the condition. I have spent hours wracking my brain, attempting to work out what is causing my pain and how to improve it. My Biochemistry degree is not proving all that useful.

My symptoms are mainly: Sore, stinging, burning, raw sensation when I sit down or lean forward from a seated position. Sex is almost impossible without some level of pain and so my sex life is practically none existent. I find I use the toilet a lot more often and have excess discharge that coincides with the pain. My pain comes and goes in flares. Some days I will have no pain and then a flare will start from nowhere and last for weeks. I also get lower back pain, extremely painful periods (with my Vulvodynia pain being at it’s worse at this stage) and muscle pain in the pelvic area.

Sitting is the main trigger of my pain. Long car journeys, playing the piano, spending the whole day at work and then sitting in the pub for a few hours are all hell. Essentially the less time I can spend sat down, the better. I now can’t wait to get home from work to get in the bath and go to bed. Sometimes I spend over 10 hours in bed! This has meant my hobbies and my social life have mainly gone out of the window.

Trousers are now a complete no-no. Tights and leggings aren’t much better and to be honest I am at my most comfortable when I am lounging on the settee completely commando. (I warned you!)

Coming to terms with not being able to wear my jeans anymore was, as silly as it sounds, one of the hardest parts of accepting this condition. I’m a rock chic at heart and I lived in jeans and t-shirts. I didn’t even own a dress! Now that’s practically all I own. Flowery, girly things that, while they look beautiful, I feel they didn’t reflect my personality.

There is also the depression. Dark day’s where I can’t believe my life has changed so dramatically. I always wonder “Why me? Did I do something in a past life that I am being punished for? Did I bring it on myself with something I did?”

The money! £100’s on new clothes and shoes, £500 on getting a private diagnosis when they NHS couldn’t work the condition out (this is a blog entry in itself!) and the £100’s I am yet to spend on medications, treatments and other things to attempt to alleviate the discomfort.

And of course the most frustrating thing of all is the lack of sex. The pain I experience when trying to have sex is horrendous. Plus when it feels like someone is constantly sandpapering or blowtorching your lady parts you don’t really feel all that sexy. “That was wonderful darling. Now excuse me a moment while I cry, rub my bits with ice and limp for a few days!”

These are just my symptoms. Other women suffer far worse than me and sometimes with varied symptoms.

So I go out far less, I have less sex and I wear dresses all the time. My money is spent on pills, potions and lotions and I spend far more time in bed than is probably healthy. However, I also spend more quality time with my fiancé (who is an absolute star by the way. I am very lucky) and I go for gentle walks on a regular basis. My life has slowed down and, you know what, it’s quite enjoyable. Small things like lying out doors with a good book and appreciating nature are all bonuses. I have started to appreciate the small things in life. So I guess that whilst Vulvodynia has taken things from me in return it has given back in the strangest of ways…..

A poor life this if, full of care,
We have no time to stand and stare.

Next time – What is that burning sensation? The day I woke with Vulvodynia.

What sort of person has the time to write a blog? And why would anyone bother to read someone else’s self absorbed ramblings??

I am ashamed to say that this was my opinion of blogs and the people who wrote them. That was before I developed Vulvodynia; a relatively unknown health condition that changed my life overnight in some completely unexpected ways. It is a condition that the NHS and the medical profession in general know very little about.

Blogs turned out to be one of the best ways I could find help, guidance and support whilst trying to understand and come to terms with this condition. Those written by women suffering from this same, relatively unknown condition that were also experiencing the same struggle as me proved to be invaluable. It was at this point that I realised that, not only did blogs give people the ability to share their thoughts and connect with people, they are great for spreading knowledge and giving people faith when before it seemed there was little hope. Yes they can be self absorbed however they often contain some really good bits of useful information and can bring people together in a way that previously wasn’t so easy.

Therefore, I too have decided to write a blog and to jump on the bandwagon. I want to give back to those women who unknowingly aided me in the past. I’m hoping also at the same time to offer support and guidance to other people who may also suffer with vulvodynia and will spend endless hours trawling the internet for just a little bit of advice. People who just want to feel they aren’t alone and that someone else understands what they are going through without the embarrassment of having to talk face to face to someone about a rather private problem. It also gives me a chance to flex my writing skills and I’m already realising just how little I know anymore about writing!!

SO the aim (hopefully) of this blog is to describe what life is like living with Vulvodynia, explain how I ended up where I am today and describe some of the treatments I have so far tried to help ease the constant suffering. Even if just one person reads this blog and thinks “you know that sounds like what I am suffering with. I am going to go to my doctor and tell him/her that I think I have vulvodynia” then this blog will have succeeded.

I have chosen the name Tender Trips as I think it sums up how life often feels – one long, tender trip.

Note – I promise this blog is not going to be one almighty moan from me about hard my life is blah blah blah…… I won’t let my life be ruled by Vuvlodynia and so neither will I let it rule my blog. I hope to talk about other things and include the random musings of the slightly odd person that is me! However be forewarned that there will be moaning. It is what I do best afterall!

Ack! That’s the first one done. Scary…

So what sort of person has the time to write a blog? Well that would be me. And why would anyone want to read one? Well…I’ll leave that up to you.